Lily's Story: A Micro-Preemie's First Year

Lily was born prematurely at 25 weeks (6 months) gestation. She was a micro-preemie, weighing just 1 pound 11.5 ounces and was only 13 inches long. Lily spent her first three months in the hospital's Neonatal Intensive Care Unit (NICU). We are happy to have her home now. Today, Lily is a happy, healthy, and very vocal little girl. This is her story.

Time in the NICU

After many years, we finally got our first (and only) baby. A precious little girl. Very little. Lily was born 15 weeks early and weighed less than 2 pounds and was 13 inches long. Like a hairless puppy, her eyes were still fused shut. It would be a few days before she could see us, or at least open her eyes.

Lily had a level 1 brain bleed as a complication of her early birth. We were fortunate that it was reabsorbed within 3 weeks and an MRI and Ultrasound showed no brain damage.

Lily spent the first 3 months of her life in the NICU (Neonatal Intensive Care Unit). Due to complications from the emergency C section, I was fortunate enough to spend those 3 months with her. I believe it helped her to have the daily (and nightly) visit from Mommy. It was hard at first seeing her in the isolette and not being able to hold or touch her very much. Babies born this early are easily overstimulated and can't be cuddled. She was very fragile and had to have medical clear tape placed on her joints so she wouldn't split her skin open by bending her arms and legs.

As a preemie's skin is so sensitive and any stimulation is overstimulation, we didn't get to touch Lily except to give her our finger to hold on to.
It would be 3 weeks before we got to hold her for the first time. Even then, it was only for 15 minutes. I got to hold her for the first 10, then Daddy got to hold her for 5. I cried so much. The flood of emotion was overwhelming.

Lily was on the ventilator for 3 days. On the fourth day, she went onto a CPAP machine. She could have gone on CPAP earlier, but they were ordering a smaller tube because her nose was so small. I joking told anyone who would listen that it would probably be the last time in her life when she was told her nose was too small. She inherited Daddy's, uh, nose. Actually, at that time it looked like all her features were Daddy's: Curly dark hair, and a large nose. I told him I couldn't believe she didn't get anything from me. He said, "Wait until she gets some fat on her, then she'll look more like you." I slugged him. Playfully, of course. He then explained that she just didn't have any fat on her and her real look would come out once she filled out some. He was right. It is funny, now, looking at her. She has all his features, but somehow also looks like me.

On her fourth day, she had her first surgery. A central line was inserted behind her ear, and ran down to her heart/stomach. This is how she received nutrients before she could eat. As Lily was so small and so early, she did not know how to suck, breathe, and swallow. She was fed by a tube which at first went through her mouth and down her throat. Once she developed a gag reflex, they put it through her nose instead of her mouth. The nurses let me hold the tube to feed her. She was getting my breast milk, just not being breastfed.

They started her out on the fourth day with 1 cc of breast milk every 3 hours, then 2 cc, then 3. Eventually, she was receiving 85 cc every 2.5 to 3 hours. But that was 3 months later.

While in the NICU, I was allowed to change her diaper once a day, sometimes twice. And if the nurses thought Lily was up to it, I could lift her up while they changed the bedding in her isolette at midnight. She was so small at that time, she was weighed in a sling which hung from the center of the isolette. Her weigh time was midnight. I tried to be there every night for it. Kind of my reality check that my baby was improving and would one day come home. I was kicked out of the NICU by night shift nurses many times because they said I needed sleep. They were right, but I was afraid to sleep at nights.

When Lily got to 2 pounds, she graduated to the "big kid" scale. This was a wonderful thing, because I was allowed sometimes to lift her from the isolette to the scale. Once she got to 2000 grams, we were able to do "Kanagroo Care" for an hour a day. I loved those 1 hour segments. I finally got to hold my baby. Jed (Daddy) had to return to work. On days when he was able to come down (we lived an hour away from the hospital), he got to hold Lily.

Lily had many spells per day, eventually decreasing over time to none. There were days when she had 12 to 15 "episodes." She would also have a spell anytime someone changed her diaper. It was a long journey. There were days when I wondered if Lily was going to make it. Fortunately, she is a fighter. A very stubborn little girl. The NICU nurses used to ask from where she got her stubborness. I had to honestly answer, it was from my side. Daddy gave her brains, I gave her gusto.

After Lily got to 3 pounds, she seemed to doing much better. We were very fortunate that she didn't have any major setbacks. She started gaining weight much faster.

There were babies in the NICU who weren't doing as well as Lily. We became friends with their parents, as most of us were staying at the Ronald McDonald House. Jed and I are "older first parents" and most the other parents were in their twenties. Mothers would come and talk to me like I was a wise older sister. This was good for me because I was able to help other people, and in doing so, I had a more comfortable role of "caregiver." Both Jed and I are semi-control freaks, and not having any control over life or death in the NICU is unnerving for any parent. For a control freak, it was even worse.

When Lily got up to 4 pounds, she came out of the isolette and into a "crib". It was more of a plexiglass bassinett on top of a changing table. Very functional. My first reaction was that she was suddenly exposed to everything. But she would have to be eventually. The nice thing was once she got into the crib, it meant they let me hold her as often as I liked. Well, nearly. They did make me put her back quite frequently. A sleeping baby is a growing baby, and she needed the restful sleep. I needed the comfort of holding my baby. I know she enjoyed it, too.

Lily got down to needing a canula line with only 1/32nd of a liter of oxygen. She just needed that little whiff. She would eventually come home on oxygen and monitors.

The happy time came to "room in" at the hospital the night before taking Lily home. The hospital policy is to room in if you are taking your baby home on any type of monitor. Lily had two monitors. Everything was fine until the alarm sounded at 7:30 in the morning. She was having a severe reflux episode. The nurse ran down the hall to our room and worked on Lily. She had us call for back up. Then they disconnected Lily from the monitors and carried her with cords dangling down the hallway back into the NICU. They worked on her for 10 minutes. Then she recovered. All the nurses in the NICU were sad to see us still there. They grew attached to Lily and had said their goodbyes thinking she was going home. Needless to say, we didn't get to bring her home at that time.

It was hard on me, not getting to take Lily home, but it was worse for Jed. I just had to have all my clothes and medical supplies brought back to the Ronald McDonald House across the street from the NICU. Jed had to go home to an empty house an hour's drive away.

That night Lily was now up to 6 pounds, 6.6 ounces. We should have known that wasn't a good sign.